Introduction

[Shar76]

Hi Everyone, My name is Shar, and I was diagnosed with CC 2 weeks ago. I'm a 67 year old female, a retired RN, and feel really overwhelmed right now. I, of course, want an instant cure, but that doesn't seem to be the case. I was prescribed Entocort, 9mg/daily, but found it, or something, seemed to elevate my BP, so I stopped taking it. I'm now taking Pepto Bismol, 8 tabs/day x 10 days thus far, and BP is back to normal, but I've seen no improvement in D symptoms. As you can see, I'm very new at this because I don't even seem to be able to introduce myself properly.

Anyway, just feeling very discouraged but also very grateful for having found this board. I'm not alone any more! I think I don't know what else to ask because I don't know enough yet, and am wondering if the rest of my medical history would be helpful for any replies.

Thanks for listening, and I hope to participate more fully soon.


Shar
xoxox

[jgivens]

Hi Shar and welcome. Seems like an awful lot of nurses and other health care professionals end up here. I too, am a nurse. My job stressed me out so badly that I quit it last May and started having D almost immediately. I feel like a slacker because I have not been well enough and/or haven't found the right job since.
I was diagnosed with CC in December, started Pepto Bismol, which I took for 15 days, but it would not have worked if my diet hadn't changed. Gluten of course, must go completely. Also, dairy whether you are sensitive or not to dairy, it will make a flare worse and the D will continue. Most of us find that a very limited diet is what works until we heal. I can't eat eggs any more and I avoid soy as well.

I had some testing done thru Enterolab, which tests stool. By doing it on the intestinal level, they have a better shot at figuring out the major food sensitivities. There are likely more foods that you react to, but unfortunately, testing is not perfected enough. Do NOT waste your money on food allergy testing--it tells you zero.

Tex's book, Microscopic Colitis, is an invaluable source of information, well worth the money. You will find that most doctors know very little about MC and don't give it much attention, as they think its a nuisance disease. It's a nuisance, all right!!! I have had a wish many times that various gastroenterologists would experience the pain, cramping, limited diet and have a few bouts of incontinence in public for about a week and I think they'd change their tune. My internist readily admits he knows nothing about it, but then tells me I should feel "lucky" that I don't have any "really bad IBD". I am glad that I don't have Crohn's or UC, but that doesn't make me want to embrace MC!
Just know that it may seem like forever, but eventually if you stick to a diet, you will get better. Try making yourself broth from chicken or beef bones. Some people can eat rice with that. Google bone broth and you'll find a good and simple recipe.
Good luck--this board has helped me SO much; I hope it does the same for you.

[JeanIrene]

Hi Shar, I'm so glad you found us. This forum was a lifesaver for me. There is so much good info here.

I agree with Jane's suggestions. Like her, I gave up gluten, dairy, soy and eggs right away. Also stayed away from fiber and limited vegetables and fruits to softly cooked ones, bananas and avocados. Homemade chicken soup was on my daily lunch menu (drumsticks are great for this). Some tolerate rice fine, but I found I did better without any grains, so just added carrots and celery to my soup.

I didn't take Entocort, wanted to try without drugs. It took a few weeks after removing gluten etc. from my diet to get rid of the D, but everyone is different. After several months I added a few foods carefully, and my diet is a little less restricted. I try to adhere to a paleo diet (all sorts of info online if you google it).

I hope you start feeling better very soon.

Jean

[tex]

Hi Shar,

Welcome to our internet family. You are correct that for some people Entocort (budesonide) can cause an increase in blood pressure. The mean time to remission in trials using the Pepto treatment was approximately 2 weeks, so hopefully you are getting close to seeing some results. Of course, for some people it can take 4 to 6 weeks, so as long as you are tolerating it OK, please don't lose faith and discontinue it prematurely. Of course, as suggested by Jane and Jean, diet changes early on are necessary in conjunction with the Pepto treatment, otherwise the odds of a relapse are very high, after the treatment is discontinued.

This is also true if Entocort or any other medication is used. IOW, the medications can mask the symptoms, and make life much easier early on (before the diet changes have had time to take effect and generate some healing), but the diet changes are essential in order to prevent a relapse, because the inflammation will continue to be generated, as long as foods to which you are producing antibodies, remain in your diet.

MC can be caused by the use of certain drugs, and for many of us, our symptoms began after using significant amounts of medications, including (but not limited to) antibiotics, NSAIDs, PPIs, SSRIs, bisphosphonates, and several others. If you are currently using any of those drugs, you may find it necessary to discontinue using them, in order to achieve remission, because quite often, even Entocort or the Pepto treatment cannot overcome the damage done by those drugs. A few people are fortunate enough that just stopping the use of the drug that triggered their MC initially, may be enough to bring remission, without a need for additional intervention. But for most of us, unfortunately, when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered at the same time, so from that point on, we will have problems with food sensitivity unless we avoid those foods to which we react.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Shar76]

Thank you all for your replies. You've given me hope.

As you may have guessed, my GI told me it was not necessary to make any dietary changes at all.....with your help I have since learned otherwise. I'm about to attempt GF, but live in the sticks in MS in what I call a 'food desert'. They wouldn't know a gluten if it hit them in the head. GI also told me there was no need to wean from Entocort as it's not a 'systemic' steroid.....even I knew that was wrong.

Jane, I HAVE noticed , even in my limited time here, that there are a lot of nurses on the board. Makes one wonder, or perhaps not. :-) I was doing travel nursing, and my last contract in Tacoma, WA, soured me on nursing forever I'm afraid. Fortunately I was at an age and circumstance where I COULD retire.

Jean, I've been reading about Paleo diets also, and they look interesting and promising.

Tex, as part of my history I've taken fluoxetine for some time, 40 mg daily, for depression, anxiety, and panic disorder. I have read that specifically Zoloft can be a problem, but Prozac is one silly little molecule different, so Hellllllllllooooooo!

I'll include a list of my comorbidities and medications:

1) Depression/Anxiety/Panic Disorder: Fluoxetine, 40 mg daily; Clonazepam 0.5 mg/bid, & Mirtazipine 15mg @ HS

2) Hypertension: Atenolol, 50 mg/daily; Zestroetic, 20/12.5mg/daily.

3) NIDDM: controlled now by diet/exercise (I was taking Metformin, 500 bid until all this WD started. Knowing Met can tear up your gut, I quit when D started last October)

Also, at someone's suggestion, I've sent for the "Medical Alert" card for private bathroom use in stores. That's my biggest fear about leaving the house...that I'll have to go and someone will say NO.

On another note, my husband says "get a 2nd opinion or find a Doc who cares". Easier said than done, as I also get the feeling they consider this a "nuisance" so changing docs is not likely to change a thing. And yes, Jane, I'd like to see one of the GI's deal with this for a month or a lifetime.


Bless you for sharing your experience. strength, and hope with me!!


Shar!

[tex]

GI also told me there was no need to wean from Entocort as it's not a 'systemic' steroid.....even I knew that was wrong.

Wow! That guy is dangerous. While it's true that it can be stopped cold turkey if it's only taken for a month or so, those who take it for a significantly longer period of time need to wean the dosage carefully. Not only is there an adrenal risk if it is stopped abruptly, but failure to taper the dose results in a mast cell rebound effect, which will typically cause a relapse of MC symptoms, even if you are carefully avoiding all your food sensitivities. As a rule, we have found that the slower the dosage is tapered (especially toward the end), the better the chances of remaining in remission after the drug treatment is ended.

The bad news about the medications you are taking is that virtually any of them could be causing your D. Even beta blockers and ACE inhibitors have been associated with the disease in some cases. However, in some cases of drug-induced MC, just stopping the use of the drug or drugs that are causing the D can sometimes bring lasting remission, without additional intervention. Most of us are not that fortunate, however, and by the time we get a diagnosis, we already have gene changes that cause food sensitivities.

The good news is that not everyone is sensitive to any or all of them, so there is a possibility that none of them is a problem. Statistically though, with so many possibilities, the chances are relatively high that one or more of them might be a problem. It's a complicated issue, because for some of us, SSRIs (or other classes of serotonin-enhancing medications) can help to regulate motility, and actually help to bring remission from MC. We are all different in the way that drugs affect us with this disease.

As far as a second opinion is concerned, I'm not sure what the point would be. Many, many cases of MC are missed by GI specialists and even pathologists who don't correctly understand the markers of the disease, and so they fail to diagnose the disease when it is actually present. That's just one of the reasons why "IBS" is so common. However, it is almost impossible for anyone, no matter how incompetent, to diagnose MC when it does not exist. IOW, if you have a diagnosis of MC, you can count on the diagnosis being correct.

On the other hand, finding a GI specialist who actually understands the disease can be helpful (accurate medical advice is always a plus), but GI docs qualified to treat MC seem to be so few and far between that most of us just assume that we are on our own for treating the disease, and we go to our doctor only if we want a prescription or a test. YMMV.

Tex

[Leah]

Welcome Shari. I agree with everyone here. You are not going to get much help from the doctors. You are going to have to take the bull by the horns, and with our help, do what needs to be done to get better.

Right away, i took out gluten and dairy. Later, i had to add soy to the list. Also, there are are foods that don't cause inflammation, but are too hard on our systems when we are flaring and will prevent healing.. You should try to stay away from RAW fruits and veggies, salad, beans and fiber foods, spicy foods, citrus and tomato( acid), and maybe coffee. These foods can be tested back in slowly one at a time when you are better. We are all slightly different when it comes to what we can and can not eat, but going gluten free has nothing to do with where you live, if you just stay away from everything made with wheat, barley, rye, and oats. Read all your labels. The less ingredients, the better.

It takes a lot of detective work, patience ,time, and perseverance, but you CAN get better.

Hang in there and ask anything
Leah

[Zizzle]

Welcome Shari!
Regarding living in a food desert, that can be tough, but we've all learned that whole, unprocessed foods are much better than all the GF alternatives. Concentrate on eating meats and well-cooked vegetables. For gluten-free alternatives, internet shopping is the way to go. You can get great deals with free shipping from Amazon.com, Vitacost.com and several others. There's also a "gluten free mall" online.

[ladyathome]

Welcome! These people have completely turned my health (physical and mental) around, not only with their knowledge and advice, but also with the support I've received from them and from reading advice given to others on here. I have been in remission for a while now, but I still come to this site daily to be reminded of how important it is to stick with the diet and maybe offer the only thing I really have...encouragement. When I first found this site, I read about the other "trouble" foods besides gluten, so I just immediately cut all of them out! I was amazed how quickly I started feeling better! I also finally did the Enterolab test, now I'm able to put back some of those foods into my diet. I wish every GI would read Tex's book and research this site! My advice is for you to get his book, read everything on this site time will allow, ask questions, and follow the advice given here! Wishing you success!

[Shar76]

Good Day, I've seen several of you refer to the "enterolab test". Can someone please enlighten me? I can make presumptions about what it is, but need the real "poop" *sorry* Couldn't resist...! Thanks again for all your encouragement. It really HELPS!

Shar

[Shar76]

Me again. lol Anyone have the URL for the "Gluten-Free Mall?

TIA, Shar

[Zizzle]

Enterolab.com. Many here do the test for gluten, dairy, soy and egg sensitivity, along with the cheek swab test for celiac genes. Others do the full package for multiple food sensitivities. They mail you a test kit, you freeze a stool sample and send it back to them by overnight mail. You get the results within 3 weeks. It's not usually covered by insurance, but you can try talking to your doctor about ordering it.

Gluten Free Mall:

http://www.celiac.com/glutenfreemall/

[jgivens]

Hi Shar,
I can give you the "poop" on Enterolab. They test your stool for sensitivities, thus doing it on the intestinal level, which no one else has been able to do. They also do genetic testing, which was helpful for me, as I have kids and I'd like to know what kind of genes I'm passing on to my grandchildren.

The testing is only on IgA alone, as testing IgE or IgG is not possible yet. It can only tell you some of your biggest sensitivities because of that. It was worth my out of pocket money to know so that I did not have to experiment so much.

Can't remember where, but I think on the information board, you'll find a description of the process and the theories behind it. Trust me, if you choose to do this, "collection" is easier than any I've ever done!

[gluten]

Hi Shar, I am gluten, diary, refined suger and soy free. I try to reduce foods that cause inflammation. I found a great site called " Nutrition Data" that gives you all the nutrients in foods. For example here's a list of some inflammation factors, coconut oil 1-tsp -111 moderately inflammatory, olive oil 1-tsp +71 mildly anti-inflammatory, wheat flour 1 cup -421, oat flour 1 cup -72, milk 2% 1 cup -70, brown rice 1 cup -593, white rice 1 cup -659, brown sugar 1 cup -1122, granulated sugar 1 cup -1043, powdered sugar 1 cup -630. The purpose of the inflammation factors is to try to balance the number to 0. As I look through the foods I try balance the combination as close to zero as possible. I have read a Paleo Diet Cookbook and use the recommedations about the meats and vegetables. The diet excludes all carbs, but I use only complex carbs in my diet. Jon

[tex]

Shar,

In additional to the excellent information that you've already received, here's some additional background information on the type of tests offered by EnteroLab. IgA antibodies are the most prominent type of antibodies associated with the type of food sensitivities that we have with MC, and those antibodies don't normally show up in the blood, except in the case of fully-developed celiac disease. Neither the earlier stages of celiac disease, nor non-celiac gluten sensitivity (the type that most of us here have) will show up on the blood tests, but they can be readily detected in stool samples, because the antibodies are produced in the intestines.

The poor sensitivity of the blood tests is the reason why the average time from first symptoms to an official medical diagnosis of celiac disese is 9.7 years in this country. IOW, the blood tests are not capable of detecting celiac disease until after a huge amount of damage has accrued in the intestines. The EnteroLab tests will detect gluten sensitivity (and other food sensitivities) years before extensive damage to the villi of the small intestine occurs. Here is a link to their tests:

https://www.enterolab.com/StaticPages/TestInfo.aspx

Tex